Long-Term Survivors: More Than Surviving

More Than Surviving
A new report calls for aging well with HIV
by Chael Needle

More than half of the 1.2 million people living with HIV in the United States are over the age of 50, according to the Centers for Disease Control and Prevention. It is estimated that by 2020, 70 percent of HIV patients will be 50 or older.” So starts a call to action in the form of a report titled, “Building a Focus on Healthy Aging for Older Adults Living with HIV.”

Year after year, Tez Anderson e-mailed the federal government to add HIV Long-Term Survivors Awareness Day to the calendar of AIDS awareness days. This year, June 5, the day thirty-five years ago when the CDC first reported on AIDS, has been officially recognized. Visibility is important as we begin to map out a vision for the future to “improve our odds for aging well,” says Anderson. “We matter. We’re not going away, and we’ll speak up if we have to. But you cannot ignore us any longer.”
Year after year, Tez Anderson e-mailed the federal government to add HIV Long-Term Survivors Awareness Day to the calendar of AIDS awareness days. This year, June 5, the day thirty-five years ago when the CDC first reported on AIDS, has been officially recognized. Visibility is important as we begin to map out a vision for the future to “improve our odds for aging well,” says Anderson. “We matter. We’re not going away, and we’ll speak up if we have to. But you cannot ignore us any longer.”

The report is a recap of a roundtable discussion held on March 2, 2016, and which brought together healthcare professionals and community advocates, including Rick Guasco, Positively Aware; Alysa Krain, MD, American Academy of HIV Medicine; Stephen Karpiak, PhD, ACRIA Center for HIV and Aging, NYU College of Nursing; and Nelson Vergel, Program for Wellness Restoration (PoWeR); among eight others. The discussion was supported by Theratechnologies, a healthy aging-focused speciality pharmaceutical company (it makes Egrifta, a treatment for HIV-related excess abdominal fat), but the experts focused on the whole health of individuals aging with HIV and reflects the participants’ own opinions. As the report suggests, age-focused treatment is important, but it alone cannot address what needs to be in place—on an individual, community, and institutional level—to maximize the potential of healthy aging with HIV.

The report first identifies the challenges faced by individuals aging with HIV, including potentially high rates of multimorbidity (age-associated comorbidities like heart diseae and various cancers) as well as a heavier disease burden. For those individuals diagnosed with HIV in the first decade and a half of the pandemic, health challenges may be made more difficult by a winnowing of financial resources and barriers to workforce re-entry; social stigma, which in turn may cause depression and isolation; lipodystrophy and its effects on the body and self-image; and a lack of support from the community and healthcare providers, who are often underinformed about the particular physical and psychological issues faced by individuals aging with HIV.

Three core themes emerged from the roundtable discussion to become a patient-centered plan of action for the immediate future:

• Advance the conversation beyond survivorship

• Re-engage older adults with HIV in efforts to improve their long-term health and minimize the complications of multimorbidity

• Increase education among healthcare providers about multimorbidity management in the older population with HIV

In reference to the last two bullet points, the report urges more educational support and initiatives for individuals aging with HIV so that they may become empowered to stay on top of issues that impact their health and wellbeing, such as multimorbidity and fears, like those surrounding body changes, that stand in the way of treatment decisions. Alternately, healthcare providers need to be educated about the unique issues faced by individuals aging with HIV, and the report sketches a curriculum that would apply lessons learned from geriatrics, incorporate the newest information about multimorbidity and other related conditions, and formalize guidelines for treating older patients living with HIV and multimorbidity.

It’s really the first bullet point, however, that drives the second two. We first need to help empower older individuals with HIV because, very often, long-term surviving with HIV has become equated with “maintenance mode”—not doing nothing, but not always striving to do better, or knowing one could have a better quality of life. Not attending to improving one’s quality of life or quality of care has become normalized to a great extent, the report states. What becomes easily forgotten is that aging with HIV need not be understood as an epilogue to one’s life; rather, with some changes, it can become a next chapter in fulfilling one’s potential.

How does one thrive amid conditions shaped by “rejection by potential partners, changes in physical appearance, lack of meaningful work and community engagement, limited financial assests, and insufficient systems of support”? In response to this question, the roundtable participants emphasized structural and educational changes in healthcare delivery, but also the importance of individual and communal resilience.

Tez Anderson, one of the roundtable participants and founder of Let’s Kick ASS (AIDS Survivors Syndrome), spoke with A&U about what he has learned about his own resiliencies, the resiliencies of others, and embracing resiliency as vital to aging with HIV.

“I thought [resiliency] was one of those things that you were born with or you weren’t,” says Anderson, fifty-seven and positive for nearly thirty-four years. “But what I’ve come to understand after decades of illness and sickness and near-death experiences and losing people… is that, when I stopped focusing on the number of times I had been knocked down and felt sorry for myself and started focusing on how I got back up every time, I started thinking of myself as resilient. It was something that I learned. It’s very messy; it’s very imperfect—but I learned that I was resilient.”

Anderson has developed a training program through which older individuals living with HIV can strengthen their resiliencies at Let’s Kick ASS, which is headquartered in San Francisco, with chapters in Palm Springs, California; Portland, Oregon; and Austin, Texas. The nonprofit has a robust online social media presence, as well.

“It has become very apparent to me that long-term survivors…differ in substantial ways from people who are more recently seroconverted,” he notes. “There’s a myriad of psychosocial and physical issues that we deal with, from neuropathy to drugs that are ineffective and resistances to polypharmacy that affect us in ways that do not affect people who have not been positive as long.”

That’s why HIV and aging needs to be a priority, he asserts, commenting also on why he thought it important to join the roundtable discussion and further amplify the conversation.

He has noted the sea change firsthand: “People are beginning to wake up to the fact that many of us are surviving, and living, and [that] it’s not enough just to simply survive. We have the right to thrive. We have the right to expect to thrive. And we need the tools to know how to do that.”

The first step is for long-term survivors to change how they perceive their lives. Is aging a series of pitfalls or plateaus only, or a series of mounting possibilities for healthy aging as well? “I think a lot of HIV care, a lot of HIV prevention, a lot of HIV work is deficit-based. ‘You need to do this, you need to do that; don’t do this, don’t do that,’” notes Anderson. “What I’m trying to do is shift the conversation to a more positive tone that says, here’s how to make our lives better.”

He continues: “We’re bombarded by constant messages online about life expectancy of people living with HIV….All these predictions about how bad it is. And granted it’s not a picnic. It’s not easy. But what we need to start doing is looking at the things that we’ve done right and ask, ‘How do we improve our odds of aging well?’ That seems to me a far more effective way to reach people than trying to tell them about the way they’re going to die soon. Because one thing I’ve learned over this many years of HIV, thirty-four years of HIV now, is that I don’t listen to anyone else’s predictions about my lifespan! They’ve been wrong so many more times than they’ve been right that I don’t put any stock in those things.” Unless a news headline promises a solution, Anderson tunes out the negative, or anything that focuses on “just surviving” rather than also thriving. After watching others, some of them friends, give up and commit suicide, Anderson is determined to figure out how we “survive survival” and not let people give up.

“When I see those things online I go, ‘Oh, there we go again.’ I don’t post them [online] because I don’t think people need that in their head—that they’re dying. What they need to get through their heads is that they’re alive.”

And not just “lucky to be alive,” as so many healthcare professionals construct older patients with HIV, as the report points out. Virologic control never should be thought of as “the best you can hope for.” Healthcare providers are intent on “micromanaging the symptoms,” notes Anderson, and let fall by the wayside the psychosocial issues of long-term survivors, very often impacted by decades of “unparalleled” trauma from “watching our whole community die while we didn’t die ourselves at that time,” stress, caregiving burn-out, and depression. Anderson also believes healthcare providers and researchers are missing an opportunity to listen to and to study long-term survivors. “How did some of us survive? How did some of us succumb faster? What are the factors that kept us alive? We don’t know that,” he states pointedly.

Structural changes are in order to address the needs of individuals aging with HIV, and poverty needs to be addressed, as well, but the change can start on an individual level, says Anderson, with one guiding credo, one wake-up call, one personal decision to not give up and accept the fate that other people say you must accept: I’m still here, I’m still alive, so how can I make my life better?

Lifestyle changes like healthful eating, which can be accomplished within most budgets, and staying active, even despite painful neuropathy or arthritis, is vital, though obviously made more difficult by physical limitations and energy levels. Anderson feels the physical effects of aging with HIV, but he makes a point not to dwell on them. That’s key, he says. Improving mental attitudes and mental health means a lot. Depression can become a major factor, but it’s treatable, he reminds. Many long-term survivors are suffering from complex post traumatic stress disorder (C-PTSD), which differs from PTSD in significant ways, manifests different symptoms, and calls for different treatments.

Capitalizing on a positive outlook and addressing psychosocial issues will take baby steps, Anderson says, even if those baby steps, at first, only take you down the block to say “good morning” to a few passers-by; it’s a start on a journey to regain the social skills you may have lost. Importantly, he notes, we need to resist “conspiring in our own invisiblity by retreating” from engagement with others, an often difficult task to accomplish, at times, when individuals continue to face stigma, community-wide rejection, and a dearth of support from AIDS services organizations rife with youth support groups and PrEP/prevention efforts. Older inviduals living with HIV have been forgotten, in essence, by the AIDS-care infrastructure they often helped fight for and build. They should not have to suffer institutional invisibility, says Anderson, nor should have unequal access to programmatic support and resources. “We need to start focusing on this issue of aging with HIV,” he says, “because aging is the new face of HIV.”

“It’s vital we get the word out that the complex psychosocial needs and the complex needs of HIV and aging are intersecting in a way that’s unique. And it needs unique care and attention, and a way to empower people to make the changes that they can make…to extend their longevity and find a reason to live. A lot of it has to do with finding a meaning and purpose.”

“For so many years our purpose was staying alive, and keeping our friends alive. If you were an ACT35-years-later UP person or activist, you were fighting for healthcare, drugs, medications, treatments. And if you weren’t, you were still taking care of somebody or you knew somebody, a friend that was a dying or a lover that was dying. We clearly had a sense of purpose in those days. The community galvanized in a way that was profound, and so moving when I look back on the way that we all rallied together to take care of each other and ourselves.” A lot of that kind of direct action and direct care is “kind of dissipating now,” he says, as “we’ve relinquished that empowerment to ASOs and to our healthcare [institutions].”

It’s time, he says, for long-term survivors to come out of their shell and re-engage with the world. “They’re great people who just acquiesced to the notion that their time was running out and that they had nothing more to offer. I think long-term survivors and people who have been living with HIV for a long time and people who are older are the ones who have the—dare I say—wisdom? We always act like it,” he says with a laugh. “But we do have a breadth of knowledge. That is what we have to offer. By dint of our experience, we have a wealth of knowledge about life and death and all the things that really matter. And if we focus on that and start putting ourselves in the roles of elders, teachers, and leaders, and stop thinking of ourselves as forgotten and invisible, that will change the dynamic as much as anything.

“Everyone got healthier, moved on, but we forgot what the purpose of our lives was. [We need to] define what our purpose is for ourselves. And the key to it is about helping not only yourself but others, one other one person or a community.

“It really does take a village to grow old. It takes a village to take care of people who are aging with HIV. The sooner we understand that and call on that spirit that we so clearly [summoned] in the early days, call on that spirit [again] to be there for each other as we age, when we need it the most, that’s one way for us to find purpose.”

In closing, Anderson mentions the archetypal hero’s journey: “The last part is you come out tranformed by the experience. That’s the part that I want to hear about.” As Anderson reminds, this is the first generation to age with HIV—pathbreakers at the start, pioneers once more.


For more information about Let’s Kick ASS and to read the report, visit: www.letskickass.org.


Chael Needle wrote about PRO 140 in last month’s Treatmen Horizons.